Thursday, March 22, 2012

The Role of Sleep and the Successful (Banned) Prescription

Hi Everyone,

I always mean to write more, but as the years go on I wind up writing less and less.  I have a bit of a pile-up of emails and commented questions, so I want to try to answer some of those questions.  WhileI can't tell you what to do, and ust tell you to always check with a trusted health care provide, I can tell you what I do, have done, experienced, and have learned.

I get a lot of questions about the prescription that is on a split ban in the US, so lets start there, because it is my sincere hope that you may be able to learn something helpful from my struggle.  The drug is called Xyrem as a prescription.  It is a chemical drug called GHB (Gamma Hydroxybuteric Acid/Sodium Oxybate) and is both a Schedule I and Schedule III drug here in the US, so it must be prescribed by a doctor who is certified to prescribe it (a process they must go through) and will arrive via Next Day FedEx directly to the patient's door from the one central pharmacy with the license to make it.  Currently it's only on-label use is "excessive daytime sleepiness" as experienced by people with Narcolepsy.  There was a trial (I believe by Orphan Medical) to make Fibromyalgia an on-label use, but as far as I know this bid was denied by the FDA.

Let's touch on why I wanted to take this drug first.  In my years of research I found some mentions of a failure to achieve the deep restorative sleep, previously called Delta Wave or Stage IV Sleep, by Fibromyalgia sufferers.  In tests research subjects who's delta waves were repeatedly disrupted developed widespread pain and fatigue.  One study suggested that the FMS pressure points became activated as well.  Essentially, delta wave disruption seemed to be causing FMS in previously healthy patients, but when the subjects were no longer interupted by teh researchers they returned to normal sleep patterns and the symptoms disappeared.  This was a big flag to me as a person with lifelong sleep disruption and insomnia.  I had been through may years of sleep inducing and assisting prescriptions as well.  As I began researching this idea further...  how to achieve this elusive stage IV sleep... I came across a number of works that suggested that nearly all, if not all, sleep related drugs were disruptive to the sleep patterns, blocking or interrupting the all important delta waves.  This spoke worlds of truth to my tired body that had been so long drugged with sleep assisting pills and was yet, thoroughly exhausted, never refreshed.   It was my father that called me one day to tell me that he had heard a short story on PBS radio about a drug that was being tested to treat delta wave disruption and included a quick note about Fibromyalgia.  It was years later that I finally found the right string of words in my Google searches that gave me Xyrem.

Once I knew the name I was able to take it to my doctor and begin the pleading process.  He did a bit of looking and returned to me with the news that it was roughly $500 per month and that even if he did write it on-label there was a good chance that my insurance company would not pay for it, but after a long discussion we went for it anyway.  A couple of weeks later I finally had the prescription in my hands, but alas, there were no instructions for use.  No dosing information.  Nothing.  It was going to be a stabbing in the dark process with a drug that I had been repeatedly warned could easily kill me.  Fun times, y'all.

It was brutal to put it shortly.  It was months before I found a dose that did not make me vomit, wet the bed, or live in a constant state of nausea and dizziness.  The headaches were long lasting as well.  It was frightening and miserable, but it did eventually work.  The pain slipped away under my distraction with the extreme exhaustion and ever present symptoms.  I lost 60 pounds during the first 3 months, dropping to 105 pounds, and living in a blur of sleep and half sleep.  Ultimately it was a friend of a friend of a friend, who had experience with recreational use of GHB, that suggested that Cannabis/Marijuana might aleviate the dizziness, nausea, and food aversion, enhance the sleep time, and be a safer drug combination than another prescription.  I had talked with my doctor already about an additional prescription, but with so little known in the medical community about GHB, no one wanted to combine anything with it.  I had to turn to the recreational users who had a wealth of information on dosing and combining.

To say that I was terrified would be an epic understatement, but I had a gut feeling and I followed it to success.  My doctor could not comment on what I was doing, and only reminded me that he had nothing to go on that could allow him to advise for or against my choices.  He simply asked me how I was feeling.  Very well.  Like a real person, I told him.  And I did.  Once I found the right combination, a much lower dose of GHB and a much higher dose of Medical grade Marijuana, I had a life.  I was skeletal, no muscle and no fat left, but I had a place to start and learned to jog and start to build strength.  I lived in this way for 11 months until I became pregnant with my second child.  Then the gig was up.  I couldn't take it while pregnant or nursing, so I was quite suddenly facing years without access to what had finally allowed me to escape this miserable disease.

The video, Healing Fibromyalgia, was filmed just before and after my daughter's first birthday, when the drug was still unavailable to me, but I could not take the return of the pain or other symptoms.  They were worse than ever before.  This is where the alternative healing treatments entered my life.  Unwilling to wean my daughter to take drugs again my doctor suggested that it was in my best interest to walk away from Western Medical and try something else.  He suggested Acupuncture.  After a few days of crying about the utter unfairness of it all, this is where I began.

Sunday, January 22, 2012

Wednesday, November 16, 2011

Quick update and Fluoride, oh my!

It's been a long time since I've posted.  I never mean it to be so long because this is so near and dear to my heart.  However, 16 of the past 20 years of my life were stolen by Fibromyalgia.  Freedom from that tends to lead to the absolute need to live life, forget about the suffering, and move forward.  This is what I've been doing.  It's hard to make myself sit down at the computer and think about, draw up, and write about something that I would rather forget ever happened.  I tend to make excuses, set false deadlines, and ultimately choose to go out, hike, play, travel, cook, whatever, instead.

I am well these days.  I am bemoaning the weakened body I am left with after such a long run of disability, but I am on the path to becoming strong and fit inside my now healthy body.  Yes, the muscle pain of exercise makes me nervous.  Any pain makes me nervous, but I am starting to trust the process and the difference between the chronic pain and symptoms of dis-ease and the ache of working long forgotten muscles and tendons.  I am an avid hiker.  I love it, and it never leaves me feeling badly.  I have been testing the waters of more aerobic exercise such as ballet, as well as strength building work in yoga and floor exercise.  Sometimes I need to take a break, and give myself space to deal with the emotional issues that come up with this.  There is fear, yes, but also anger, resentment, frustration, grief...

It has never been easy, but it has been worth it.  From the first decision to stop all prescription drugs to the last decision to start using my body again, it has been worth it.

As to the Fluoride I mentioned in the title, I'd like to share this with you.

A reader shared this with me and I admit that though I was aware of the many reasons to avoid Fluoride, I believed that it was limited to dental products and municipal water.  I never considered that I could have ever been experiencing Fluoride poisoning.

I did not know that it was added to pharmaceuticals from general anesthetic to antidepressants.  Over my years of prescription treatment, at the hands of my doctors, I was unknowingly exposed, chronically, to fluoride.  So much for Informed Consent.  Sheesh.

Before you begin I would like to say that I fully believe myself to be living proof, not only that Fibromyalgia is a disease of toxicity/poisoning and malnutrition, but also of it's reversibility through diet, cleansing, removal of chemicals, additives, preservatives, and dyes from my life on the whole, and nutrient dense supplements.  Things such as herbal tinctures and acupuncture are what I relied upon to help me through the pain of the healing process.  They did not heal me.  The path that I have undertaken to remove Fibromyalgia from my life is taken by many people with equal success in their treatments of everything from Chron's ,to Autism, to Cancer.  The human body wants to be whole.  It wants to be fed, and it wants to be unpolluted.  Most importantly it is a self healing miracle.  Given the chance your body can heal anything.  With a bit of research you can find at least one person to have recovered from all manner of incurable disease.

Without further ado, here are some links to start with:

The Cause of Fibromyalgia

http://www.earthclinic.com/CURES/fibromyalgia.html#cause


Index of Fluoride containing Pharmaceuticals
http://www.slweb.org/ftrcfluorinatedpharm.html

Chronic Fluoride Poisoning Q&A

www.earthclinic.com/FLUORIDE_QA.pdf

High density sources of vitamins - yes, in FOOD.

http://www.healthaliciousness.com/most-nutritious-foods-lists.php

While I fully believe that most of our diseases today, such as Fibromyalgia, are a direct result of environmental poisoning, I never knew how insidious Fluoride had become.

Thursday, July 14, 2011

The Past 5 Wks - Post Detox - LIFE RETURNS

Writing the details of what you're going through while you are suffering it can be a bit much.  It was for me this time.  If I was feeling well enough to write the last thing I wanted to do was recall the symptoms so that I could write about them.  This time around was hard.  Much harder than the first because it was done over a much shorter period of time.  The last time I began eating a fully organic diet a few years before I started eating a whole food diet.  The whole food diet was almost a year before I began the GAPS restrictions, etc.

This time I already knew what I had to do and began it all, cold turkey, at the same time.  The repercussions were pretty severe.  The detox was awful, and not knowing how long it was going to last was difficult to manage.  But, alas, a mere two days after I thought I couldn't handle the severity of the symptoms anymore and went looking for help, they began a hard, fast decline.  So fast that I was left feeling like it couldn't possibly have been as awful as I thought it was, or that it was just a lull and would come back.

It hasn't.  Four weeks ago I took a big plunge and enrolled in a beginner's ballet class for adults.  I won't lie.  I was scared.  I almost backed out over and over again.  I almost left during class for fear that I was going to overdo it.  When the instructor told us at the end of class that we were now going to do one full minute of situps every part of my brain went NOOOOOOO.  No!  Bad idea!  Don't do this!  But I did.  I did it.  I never expected that I could even do it, just that I would try and either hurt myself or plain not be able to DO a situp.  I simply could not believe it when I did it.  I got tears in my eyes.  The music ended, the class clapped, the teacher beamed at us and told us how proud and excited she was to do this class and we walked out the door into the sunny parking lot.  My family was waiting in the car, expectant, wide eyed.   The class had gone 1 hour and 45 minutes.  They couldn't believe it and as I watched them watching me walk across the parking lot I knew in that moment that even if I did suffer the next day that it was worth it.  The way that I felt in that moment; the strength, the pride the freedom... even if it was never to happen again, it was worth it.

As if that wasn't enough for a happy ending.  If that wasn't just almost too much to take it... the next two days came and went uneventfully.  No flare ups.  Nothing that said Fibromyalgia.  I felt what I assume every other dancer felt the next day: the muscles that I hadn't used before.  When I told my husband I did cry.  I cried because of the relief.  I really was so scared.  I cried because I felt like an ass.  I cried because I had lived without symptoms for sooo long and then made choices.  Choices that I knew I shouldn't make.  I made excuses.  I felt guilty for where I had put myself again and where I took my family when I went there.  I cried for all the food I ate that polluted my body, for all the times I stayed up watching a movie instead of going to bed.  I cried for all the times I should have made infusion instead of buying a cup of coffee.  I cried and got all the crap out and then let it float away because they didn't blame me.

It's hard.  In the world we live in, in the culture we live in: it's hard.  Even when you know, from personal experience, what you need to do - it's hard.  And that's okay.

I'd like to say that I won't do it again.  That I'll never let myself feel another Fibromyalgia symptom again, but I know that that's a lie.  I know that it's been a matter of weeks since I proved to myself that I have control of whether or not I experience Fibromyalgia and I STILL had an ice cream cone in the historic center last night while sitting with friends.

That's who I am.  There is some part of me that needs to understand exactly, exactly what I can and cannot do.  Exactly how far I can go.  Exactly how much, how long... I just need to.   I first proved to myself that I could live for years without symptoms.  Then I needed to know how much of the restrictions were certain and how certain they are.  Now I know.  I really do.

I've learned some new things this time around too.  Playing with specific types of foods to see my level of sensitivity to them.  Watching which symptoms are affected by what choices.  Knowledge is power.  It's enough for me to be able to say that I will likely never eat gluten again.  I will never eat anything that contains an additive, binder, or "naturally derived" adulterated ingredient again.

I want to do more than survive the ballet class.  I want to find strength and grace that I have never known.  I want to dance in the recital next year. :-p  Yesterday I hiked for one hour straight up the side of the mountain next to our cabin.  We barely stopped as the thunder clouds rolled in.  My kids wanted to make it "all the way to the top" and so did I.  Just as we reached the summit the sky opened up and rain poured down on us.  We were on a new trail with nothing beyond a sense of which direction would be a sure trail down (rather than to an impassible gorge).  We're adventurous and never take the same trail down that we took up.  We follow the elk paths and we have real adventures.  It was another hour down the mountain via a valley that a spring fed creek ran through.  It was like a different world in there.  The ridges rising a hundred feet over our heads and the grass and flowers grown as tall as my daughter were so different from dry desert mountain all around it.

I want that more than I want any of the things that I can't have.  I want that more.

To our health.

xoxo

Wednesday, July 13, 2011

Is American Medicine Working?

"US health care spending reached $1.6 trillion in 2003, representing 14% of the nation’s gross national product.26 Considering this enormous expenditure, we should have the best medicine in the world. We should be preventing and reversing disease, and doing minimal harm. Careful and objective review, however, shows we are doing the opposite. Because of the extraordinarily narrow, technologically driven context in which contemporary medicine examines the human condition, we are completely missing the larger picture...A definitive review of medical peer-reviewed journals and government health statistics shows that American medicine frequently causes more harm than good...What you are about to read is a stunning compilation of facts that documents that those who seek to abolish consumer access to natural therapies are misleading the public. Nearly 800,000 Americans die each year at the hands of government-sanctioned medicine, while the FDA and other government agencies pretend to protect the public by harassing those who offer safe alternatives."

Death By Medicine by Gary Null, PhD; Carolyn Dean MD, ND; Martin Feldman, MD; Debora Rasio, MD; and Dorothy Smith, PhD

Let's Be Clear

I've just had a member of the board of the Fibormyalgia & Chronic Pain Association publicly dismiss me and warn people against anyone claiming to have cured their Fibromyalgia.  Her reason:  If there were a way SHE would know about it.   It seems that in order to have truly eradicated my FM I needed to have held a press conference and been validated by the all knowing Association.  Not that I think they would have paid me any attention.... after all, where would someone like that be if people suddenly ridding themselves of their pain and symptoms all on their own.   Otherwise they may have noticed that there a quite a few people claiming to have cured their Fibromyalgia.  A quick #Fibromyalgia search on Twitter will quickly overwhelm you.  You could get buried for days following the symptom elimination links on the internet.

But, to be fair.  Let's just be more impeccable with our words from now on.  "Cure" is a word that is now owned mostly by the establishments that have done little but tell people that they need millions of dollars to "find a cure" but never have.  Let's let them have the word.  We don't "cure".  We "Heal."  We "Eliminate."  We "Terminate."  We "find the way to live free of symptoms and return to a level of health that we may not remember ever having had."  We cast out, count out, cut out, defeat, discharge,  dispense with, dispose of,  do away with, drive out, drop, eject, eradicate, evict,  expel, exterminate, get rid of,  knock out, phase out, put out, rub out, rule out, set aside, shut the door on, slay, stamp out, take out,  waste, or wipe out.

We don't "cure"  We Annihilate.

While we are it, let's look at two more words.  Just to be clear...

Heal:
–verb (used with object)
1. to make healthy, whole, or sound; restore to health; free from ailment.

2.to bring to an end or conclusion

3.to free from evil; cleanse; purify: to heal the soul.


–verb (used without object)
4.to effect a cure. <whoops there it is again! let's change that.  4. to dispense with symptoms

5.(of a wound, broken bone, etc.) to become whole or sound; mend; get well (often followed by up or over).


Rebel:
–noun
1. a person who refuses allegiance to, resists, or rises in arms against government or ruler of his or her country.

2. a person who resists any authority, control, or tradition.


I'd like to warn you all to be very aware of any one or any organization telling you that something isn't possible.  It's always "impossible" until someone does it.  Then, somehow, it's still impossible until they do it.

Rebel!  Take control of your own health!

Oh, and let's not forget to be clear here:

I am NOT a doctor.  I have NO legal right to tell you what to do.  In fact, you would do well to always CHECK WITH AS MANY SOURCES AS POSSIBLE before you do anything to your body. Check with your acupuncturist, your doctor of oriental medicine, your certified herbalist, your nutritionist or any healer of your choice.

What I am is a person who suffered for nearly two decades; buried alive beneath a crushing "disease" and drowning in treatments that always made me feel worse and often added new symptoms.   If Fibromyalgia where caused by what the authorities suggest then there would be little hope.  But, as usual, symptoms are being mistaken as causes.  There are root causes alright and they can be "eliminated."

What I am is a busy mom, a survivor, a homesteader, a traveler, an artist and a person who has carved out time to offer up anything that I have to share in response to the hundreds of emails I've received asking for just that.  It's taken me three years to put this together.  Three years to tear myself away from the new found ability to LIVE my life and return to thinking about something that I never intend to experience.  I hope you find what you need here to help you go out and heal yourself.

Thursday, June 2, 2011

Detox blues

It seems that cutting the wheat cold turkey and adding in more bone stock and coconut oil are causing some serious detox symptoms for me and pretty minor ones for J.  First it was breakouts and dry patches on my face.  Then I started what seems to be a cycle of 4 or 5 days of increasing nausea, exhaustion, intestinal struggles, dizziness and that general "I'm getting the flu" icky feeling.  Then it subsides and I have 4 or 5 days of increasing health before I start over again.

About four days ago I started to have this unpleasant tingle-hurt feeling in my lip where I found a tiny lump deep inside.  By the time I got home 5 or so hours later it was blooming into a cold sore such as I have never seen.  I have had about 5 small cold sores in the same spot over the past 10 years.  I know the drill and the look of this one was beyond my comprehension.  I knew it would be bad as it was clearly going to be some 6 times larger than anything I'd ever seen before, but I wasn't really prepared for all of the symptoms of it to be multiplied so.  I spare you the details, but I'll tell you that the pain literally brought me to the floor two mornings in a row.  On the afternoon of the worst day I nearly fainted from the intensity of the unceasing pain.  I've had three home births.  I can do a little discomfort, but this was wicked, searing, torturous pain that will likely have me quaking in my boot the next time I think I may be getting one.

Now that it's winding down and on its way out I've got an absurdely large canker sore forming inside my lip near my gum line.

Oh the joys of detoxing.  The answer I suppose is to work the other lines of elimination a bit better... more detox baths, more skin brushing, more water...  Being that I'm still nursing little S, I cannot partake in any of the more rigorous detoxing methods, so this could drag out for me for a while.

I'm also planning to go ahead and get some blood work done with a naturopathic doctor or a DOM to see exactly what's going on in my body and what I can do to ease symptoms and better support my body.  I'll be meeting with a master herbalist as well to get the lowdown on what exactly I can and cannot take to aid this process of healing up my body.  This kind of thing is a bit beyond my family herbalist training.

Another thing that I have been thinking of, but not acting on is acupuncture. It was such a huge help through this process the last time and I went three times a week for several months.   We're lucky enough to  have a group session clinic even in our small town and this is how I was able to afford the treatments last time.  As with anything, consistency and regularity make a difference when it comes to healing, and it would be best for me to get out there at least once per week right now.  However, even once per month would be better than nothing at all.

A little note: if you haven't checked your household cleaning and beauty products with the Environmental Watch Group's databases yet, I highly recommend it.  It is hard to clean up your body and begin the path of healing if the poisons are still coming in and piling up.  Also consider staying away from anything with Nitrates and Nitrites, even wine.  Wine is something that though I love it, I can really only handle one glass every few months without feeling badly.   When I'm in a state of regular illness like I am now and anyone just beginning would be it is best to stay away from it entirely.

I'm doing better with the sugar that I've been getting in my Alter Eco chocolate bars.  I've cut down to only one small square in the evening which equates to a fraction of a gram of sugar.  I've also added in a few doses of Motherwort tincture (5 drops) three or so times per day while the detoxing symptoms are present and leaving me feeling stressed and sleep deprived.

Are you out there?  How are you doing?